My daughter usually has a few hospital admissions during the year. She has been in the pediatric intensive care unit at least 3 times during those visits. She has medication and food allergies. She has respiratory therapies that must be followed exactly.
She is on 10 different medications. She goes to the same hospital each visit, so it would be easy to assume all her information would be known. But each visit I must double-check everything to make sure she receives the proper care.
During our last hospital visit, there were a few mistakes made. Unfortunately, I caught only one of them. The other I did not realize until a few days after returning home.
My daughter has a feeding tube. She gets most of her nutrition and all her fluids by it. But she does not get her medications this way. One of her medications is an extended release pill. It cannot be crushed or it will give her toxic levels of the medicine. Each day, she swallows all her pills in a spoonful of applesauce.
I need to tell each nurse that comes on shift during her hospital stays about this. Or else they will crush her pills and try to give them via feeding tube. I literally must “check and check again."
I make sure that her allergies are always listed in her chart. She always wears an allergy ID bracelet while at the hospital. I still must double check because there will be slip-ups. For instance, when she used to eat by mouth I would order her meals through the hospital cafeteria. They would confirm that she couldn't have gluten. Her food would still arrive with gluten foods that she could not eat.
Even the nutritionist can make mistakes. At her last hospital visit, the nutritionist added a protein powder to her feeds. I did not check it. It was not until we got home and my girl was in a lot of tummy pain that I realized the powder had milk in it.
Every visit, every detail, I must check and recheck! If I don’t, my child is the one who suffers.
Here are some other articles that will help you prepare for your child’s hospital stay.
Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child.
Categories: Family Support
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support